Day Twenty-Three, Cushing’s Awareness Challenge
So often during the diagnosis phase of Cushing’s I felt like this picture – I was walking alone to an unknown place with an unknown future.
My diagnosis was pre-Internet which meant that any information had to be gotten from libraries, bookstores, magazines…or doctors. In 1983 to 1986 I knew something was terribly wrong but there was no backup from doctors, family or friends. My first hope was from a magazine (see Day Six)
After I got that first glimmer of hope, it was off to the library to try to understand medical texts. I would pick out words I did understand – and it was more words each trip. All my research led me to Cushing’s.
Unfortunately, the research didn’t lead me to doctors who could help for over 3 years. That contributed greatly to the loneliness. If a Doctor says you’re not sick, friends and family are going to believe the doctor, not you. After all, he’s the one trained to know what’s wrong, or find out.
I was so grateful when I finally got to NIH and was so nice not to be alone with this mystery illness. I was also surprised to learn, awful as I felt, there were Cushies much worse off than I was.
I am so glad that the Internet is here now helping us all know that we’re not alone anymore.
We’re all in this together with help, support, research, just being there. I love this quote from Catherine at http://wheniwasyou.wordpress.com/2012/03/31/wheniwasyou/
Mary, I am delighted to see you here. Cushings – because of the persistent central obesity caused by (we know now) the lack of growth hormone plus the hypothyroidism I was diagnosed with (but for which treatment was ineffective due to my lack of cortisol) – was one of the things I considered as an explanation for my symptoms. Your site was enormously educational and helpful to me in figuring out what might be happening to me. Those other patient testimonies I referred to? Many of them were the bios you posted. Thank you so much for commenting. I am so grateful for the support and encouragement. I really hope that my experiences will help other undiagnosed hypopituitary patients find their way to a diagnosis. I often used to dream that one day I’d get to say to others what was so often said to me: don’t give up, there will be an answer. I kept believing in myself because people I hadn’t even met believed in me. Now I am finally here and I do hope my story will help others to have faith in their own instincts.
Thanks again. Please do keep in touch.
Catherine
Day Twenty-two, Cushing’s Awareness Challenge
Filed under: Cushing's Awareness Challenge, Cushings, pituitary
It’s Sunday again, so this is another semi-religious post so feel free to skip it 
I’m sure that many would think that this is a semi-odd choice for all-time favorite hymn.
My dad was a Congregational (now United Church of Christ) minister so I was pretty regular in church attendance in my younger years.
Some Sunday evenings, he would preach on a circuit and I’d go with him to some of these tiny churches. The people there, mostly older folks, liked the old hymns best – Fanny Crosby and so on.
So, some of my “favorite hymns” are those that I sang when I was out with my Dad. Fond memories from long ago.
In 1986 I was finally diagnosed with Cushing’s after struggling with doctors and trying to get them to test for about 5 years. I was going to go into the NIH (National Institutes of Health) in Bethesda, MD for final testing and then-experimental pituitary surgery.
I was terrified and sure that I wouldn’t survive the surgery.
Somehow, I found a 3-tape set of Readers Digest Hymns and songs of Inspiration and ordered that. The set came just before I went to NIH and I had it with me.
At NIH I set up a daily “routine” of sorts and listening to these tapes was a very important part of my day and helped me get through the ordeal of more testing, surgery, post-op and more.
When I had my kidney cancer surgery, the tapes were long broken, but I had replaced all the songs – this time on my iPod.
Abide With Me was on this tape set and it remains a favorite to this day. Whenever we have an opportunity in church to pick a favorite, my hand always shoots up and I request page 700. When someone in one of my handbell groups moves away, we always sign a hymnbook and give it to them. I sign page 700.
I think that many people would probably think that this hymn is depressing. Maybe it is but to me it signifies times in my life when I thought I might die and I was so comforted by the sentiments here.
This hymn is often associated with funeral services and has given hope and comfort to so many over the years – me included.
If you abide in Me, and My words abide in you, you will ask what you desire, and it shall be done for you.
~John 15:7
Abide With Me
Words: Henry F. Lyte, 1847.
Music: Eventide, William H. Monk, 1861. Mrs. Monk described the setting:
This tune was written at a time of great sorrow—when together we watched, as we did daily, the glories of the setting sun. As the last golden ray faded, he took some paper and penciled that tune which has gone all over the earth.
Lyte was inspired to write this hymn as he was dying of tuberculosis; he finished it the Sunday he gave his farewell sermon in the parish he served so many years. The next day, he left for Italy to regain his health. He didn’t make it, though—he died in Nice, France, three weeks after writing these words. Here is an excerpt from his farewell sermon:
O brethren, I stand here among you today, as alive from the dead, if I may hope to impress it upon you, and induce you to prepare for that solemn hour which must come to all, by a timely acquaintance with the death of Christ.
For over a century, the bells of his church at All Saints in Lower Brixham, Devonshire, have rung out “Abide with Me” daily. The hymn was sung at the wedding of King George VI, at the wedding of his daughter, the future Queen Elizabeth II, and at the funeral of Nobel peace prize winner Mother Teresa of Calcutta in1997.
Abide with me; fast falls the eventide;
The darkness deepens; Lord with me abide.
When other helpers fail and comforts flee,
Help of the helpless, O abide with me.
Swift to its close ebbs out life’s little day;
Earth’s joys grow dim; its glories pass away;
Change and decay in all around I see;
O Thou who changest not, abide with me.
Not a brief glance I beg, a passing word;
But as Thou dwell’st with Thy disciples, Lord,
Familiar, condescending, patient, free.
Come not to sojourn, but abide with me.
Come not in terrors, as the King of kings,
But kind and good, with healing in Thy wings,
Tears for all woes, a heart for every plea—
Come, Friend of sinners, and thus bide with me.
Thou on my head in early youth didst smile;
And, though rebellious and perverse meanwhile,
Thou hast not left me, oft as I left Thee,
On to the close, O Lord, abide with me.
I need Thy presence every passing hour.
What but Thy grace can foil the tempter’s power?
Who, like Thyself, my guide and stay can be?
Through cloud and sunshine, Lord, abide with me.
I fear no foe, with Thee at hand to bless;
Ills have no weight, and tears no bitterness.
Where is death’s sting? Where, grave, thy victory?
I triumph still, if Thou abide with me.
Hold Thou Thy cross before my closing eyes;
Shine through the gloom and point me to the skies.
Heaven’s morning breaks, and earth’s vain shadows flee;
In life, in death, O Lord, abide with me.
Day Twenty-One, Cushing’s Awareness Challenge
Since I’m posting this on April 21, I had a built-in topic.
The image above is from our first local meeting – note the 6 Cushing St. sign behind us. Natalie was the one in the middle.
Today is the 4th anniversary of Natalie’s death. Last month was the anniversary of Sue’s death. I wrote about Janice in Day 19.
It’s just not right that this disease has been known for so many years, yet doctors still drag their feet diagnosing it and curing Cushing’s.
Why is it that we have to suffer so much, so long, and still there are so many deaths from Cushing’s or related to Cushing’s symptoms?
I know far too many people, good people, who suffered for many years from this disease that doctors said they didn’t have. Then they died. It’s time this stopped!
Speaking of death – what a cheery blog post this is turning out to be. NOT!
I had been following the blog posts of a young woman who had “my” cancer”. She recently died. I never knew her but she sounded like such a wonderful person who truly lived while she had the chance.
I wish I could be more like that and have a real life while I’m still here. My life seems to be reduced to doing for others.
When is it my turn?
Day Eighteen, Cushing’s Awareness Challenge
Filed under: Cushing's Awareness Challenge, Cushings, pituitary
Over the years, we went on several Windjammer Barefoot Cruises. We liked them because they were small, casual and were fairly easy on the wallet.
They sailed around the Caribbean to a variety of islands, although they sometimes changed itineraries depending on weather, crew, whatever. One trip we were supposed to go to Saba but couldn’t make port. A lot of people got off at the next port and flew home.
The captains were prone to “Bedtime Stories” which were often more fiction than true but they added to the appeal of the trip. We didn’t care if we missed islands or not – we were just there to sail over the waves and enjoy the ride.
The last trip we took with them was about two years before I started having Cushing’s problems. (You wondered how I was going to tie this together, right?)
The cuise was uneventful, other than the usual mishaps like hitting docks, missing islands and so on. Until it was a particularly rough sea one day. I was walking somewhere on deck and suddenly a wave came up over the deck making it very slippery. I fell and cracked the back of my head on the curved edge of a table in the dining area. I had the next-to-the-worse headache I have ever had, the worst being after my pituitary surgery. At least after the surgery I got some morphine.
We asked several doctors later if that hit could have contributed to my Cushing’s but doctors didn’t want to get involved in that at all.
The Windjammer folks didn’t fare much better, either. In October 1998, Hurricane Mitch was responsible for the loss of the s/v Fantome (the last one we were on).
All 31 crew members aboard perished; passengers and other crew members had earlier been offloaded in Belize.
The story was recorded in the book The Ship and the Storm: Hurricane Mitch and the Loss of the Fantome
This event was similar to the Perfect Storm in that the weather people were more interested in watching the hurricane change directions than they were in people who were dealing with its effects.
I read this book and I was really moved by the plight of those crew members.
I’ll never know if that hit on my head contributed to my Cushing’s but I have seem several people mention on the message boards that they had a traumatic head injury of some type in their earlier lives.
Day Seventeen, Cushing’s Help Challenge
Way back when we first got married, my husband thought we might have a lot of kids. He was from a family of 6 siblings, so that’s what he was accustomed to. I am on only child so I wasn’t sure about having so many.
I needn’t have worried.
In January, 1974 I had a miscarriage. I was devastated. My father revealed that my mother had also had a miscarriage. I had no idea.
At some point after this I tried fertility drugs. Clomid and another drug. One or both drugs made me very angry/depressed/bitchy (one dwarves I left off the image) Little did I know that these meds were a waste of time.
Eventually, I did get pregnant and my wonderful son, Michael was born. It wasn’t until he was seven that I was finally, actually diagnosed with Cushing’s.
When I had my early Cushing’s symptoms, I thought I was pregnant again but it was not to be.
I’ll never forget the fall when he was in second grade. He was leaving for school and I said good bye to him. I knew I was going into NIH that day for at least 6 weeks and my future was very iffy. He just turned and headed off with his friends…and I felt a little betrayed.
Michael wrote this paper on Cushing’s when he was in the 7th grade. From the quality of the pages, he typed this on typing paper – no computers yet!
Click on each page to enlarge.
When Michael started having headache issues in middle school, I had him tested for Cushings. I had no idea yet if it could be familial but I wasn’t taking any chances. It turned out that my father had also had some unnamed endocrine issues. Hmmm…
I survived my time and surgery at NIH and Michael grew up to be a wonderful young man, if an only child. :)
After I survived kidney cancer (see the post from April 12) Michael and I went zip-lining - a goal of mine after surviving that surgery. This was taken in a treetop restaurant in Belize.
For the mathematically inclined, this is his blog. Xor’s Hammer. I understand none of it.
